Principles for the development of Aboriginal health interventions: culturally appropriate methods through systemic empathy.

Ethnicity & Health

ISSN: 1355-7858 (Print) 1465-3419 (Online) Journal homepage: http://www.tandfonline.com/loi/ceth20

Principles for the development of Aboriginal health interventions: culturally appropriate methods through systemic empathy Elizabeth Kendall & Leda Barnett To cite this article: Elizabeth Kendall & Leda Barnett (2015) Principles for the development of Aboriginal health interventions: culturally appropriate methods through systemic empathy, Ethnicity & Health, 20:5, 437-452, DOI: 10.1080/13557858.2014.921897 To link to this article: http://dx.doi.org/10.1080/13557858.2014.921897

Published online: 04 Jul 2014.

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Date: 05 November 2015, At: 17:19

Ethnicity & Health, 2015 Vol. 20, No. 5, 437–452, http://dx.doi.org/10.1080/13557858.2014.921897

Principles for the development of Aboriginal health interventions: culturally appropriate methods through systemic empathy

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Elizabeth Kendall* and Leda Barnett Griffith Health Institute, Griffith University, Meadowbrook, Australia (Received 17 March 2014; accepted 1 May 2014) Objective. To increase Aboriginal participation in mainstream health services, it is necessary to understand the factors that influence health service usage. This knowledge can contribute to the development of culturally appropriate health services that respect Aboriginal ways of being. Design. We used a community-based participatory approach to examine the reasons for underutilization of health services by Aboriginal Australians. Results. Based on three focus groups and 18 interviews with Aboriginal health professionals, leaders, and community members in rural, regional, and urban settings, we identified five factors that influenced usage, including (1) negative historical experiences, (2) cultural incompetence, (3) inappropriate communication, (4) a collective approach to health, and (5) a more holistic approach to health. Conclusion. Given that these factors have shaped negative Aboriginal responses to health interventions, they are likely to be principles by which more appropriate solutions are generated. Although intuitively sensible and well known, these principles remain poorly understood by non-Aboriginal health systems and even less well implemented. We have conceptualized these principles as the foundation of an empathic health system. Without empathy, health systems in Australia, and internationally, will continue to face the challenge of building effective services to improve the state of health for all minority populations. Keywords: Australian Aboriginal health; cultural competence; Murri health; empathy; health reform

In 2011, Aboriginal and Torres Strait Islander people represented only 2.5% of the population, but were hospitalized for chronic preventable conditions, such as diabetes and cardiovascular disease, at nearly twice the rate of non-Aboriginal Australians (AIHW 2011). The rate of smoking and obesity among Aboriginal people is twice that of nonAboriginal Australians, placing them at greater risk of disease. Most importantly, death rates are much higher than the general population, with 66% of these deaths occurring before age 65 compared to 20% in the non-Aboriginal population. Despite this high prevalence of poor health, health promotion and preventative services or programs continue to be consistently underutilized by Aboriginal people (AIHW 2011). Our previous Aboriginal and Torres Strait Islander Social Justice commissioner, Tom Calma, demanded that Australian Governments commit to ending the disparity between non-Aboriginal and Aboriginal health and life expectancies within the next 25 years *Corresponding author. Email: [email protected] © 2014 Taylor & Francis


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(HREOC 2005). This report culminated in the ‘Closing the Gap’ campaign, which aimed to reduce the life expectancy gap in Australia within one generation. Among many other programs, the government committed $805.5 million over four years to tackle preventable chronic disease by developing programs and services to reduce risk factors, encourage early detection, and facilitate better management and follow up of chronic disease in primary health-care services. The campaign also aimed to increase the capacity of the primary care workforce to deliver effective health care to Aboriginal Australians. This campaign was based on the recognition that if Aboriginal people are to have the same health prospects, prosperity, and quality of life as the nonindigenous population, it is necessary for them to have the same access to health services. A recent systematic review of 138 studies highlighted the importance of this campaign by demonstrating a significant association between self-reported racism and poor health (Paradies 2006). The most consistent effect found in this review was not only in terms of mental health but also health behaviors. Most importantly, longitudinal studies included in the review suggested that racism preceded ill-health. A more recent systematic review (Zeh et al. 2012) examined the outcomes associated with 11 diabetes interventions delivered to 2616 people from culturally diverse groups. The interventions were independently rated as being culturally competent, although only 64% were rated as being highly competent. This review identified significant benefits in health knowledge, self-efficacy, attitudes, and clinical outcomes at little or equal cost to current interventions. Although further research is needed, there is clear indication that culturally competent services may bring about improvements in health outcomes. In light of this evidence, it is not surprising that a plethora of cultural competence programs has been implemented over the last few years. One of the most widely known frameworks in Australia is the cultural respect framework (DoHA 2004), which was developed and implemented by the Australian Government. This framework offered a comprehensive approach to planning services and ensuring that appropriate cultural protocols were applied. In short, the framework recognized health as a cultural concept and recommended adherence to eight principles to achieve culturally competent services. These principles included the promotion of good health in communities and a responsive, holistic approach, based on community control over services where possible, collaborative planning and delivery, and localized decision-making with emphasis on capacitybuilding and accountability. If successfully implemented, the framework should have resulted in culturally competent services, that is services in which there is no assault on a person’s identity caused by service delivery methods or processes that are alien to the culture of clients (see Kendall and Marshall 2004).

The reality of health service development In reality, many Aboriginal people continue to avoid mainstream health service facilities, labeling them as culturally incompetent. Much of this problem can be attributed to the fact that health services are still developed using evidence drawn from the general population rather than using more localized and specialized evidence derived from culturally appropriate methods. Evidence-based health interventions are generally thought to require knowledge derived from a representative sample of the population (i.e., the greater the number of participants the more generalizable the findings) using controlled trials with random allocation of participants to different conditions. However, these


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designs are typically problematic in small populations, such as Murri communities. They tend to underrepresent the Aboriginal population, resulting in erroneous conclusions and the inappropriate application of mainstream findings to a minority group. As a result, interventions rarely meet the needs of the target population and valuable resources are wasted. Meeting the health needs of Australia’s Aboriginal population is important from both an economic and humanitarian perspective. Continuing to develop services based on conclusions extrapolated from non-Aboriginal knowledge will not bridge the gap and reduce the health disparities found among Aboriginal people. Indeed, this approach may only exacerbate the health concerns experienced by minority populations. It has been argued that one way to achieve equity for Aboriginal people is to seek culturally appropriate knowledge through the use of culturally appropriate methods (Cochran et al. 2008; Rigney 1999). Interventions developed from this base are more likely to be accepted and utilized by Aboriginal communities and, therefore, more likely to have a positive impact on health. In this regard, Rigney (1999) advocated for research based on a body of knowledge that is unique to Aboriginal scholars and gained through an understanding of the influence of history and the broader cultural context on Aboriginal people. In this paper, we present the findings of a qualitative study designed to explore Aboriginal views about the use of health services in an attempt to understand the factors that should be considered when developing and delivering health-promoting interventions for this population. Specifically, we sought Aboriginal views about the factors that were associated with the underutilization of health services in the community so that our findings could guide the development and delivery of more relevant interventions in future. At all stages of the research, we sought to use culturally appropriate methods developed by and for the local participants.

Methods Participants in three community sites interacted with an Aboriginal scholar, Leda Barnett (LB) who used the techniques of community-based participatory research (Fletcher 2003) to engage with three Aboriginal communities. In each region, the study began with our general immersion in the community for a period of one week. During this period, we met informally with local people (referred to as Murri1) at community gatherings, visited health services, and met with as many elders as possible. We gained appropriate introductions to the elders and established common connections (i.e., people, places, and ideas). We actively sought advice and guidance from both community members and health professionals about how to conduct the research. We participated in local events and engaged with as many different sectors within the community as possible. Our acceptance in the community usually resulted in invitations to participate in important social or educational events, which provided opportunities to formally explain the research. Our community observations allowed us to identify the local cultural protocols that would guide our behavior during data collection (i.e., the local kinship structure, hierarchies of power, language used, common vernacular, regions and places of interest, or importance, history, and local events) and confirmed the most appropriate elders to consult for permission to conduct the research. This period also provided insights into how the local health system operated, how health services were perceived and used by the

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local community, and the relationships between health professionals and community members. More importantly, this period was critical to the establishment of common interests, cultural ties, relationships, and affiliations that built credibility and legitimacy. Following this period, our research proceeded with permission of key elders in each community. Although we generally followed a common procedure across the three sites, the specific manner in which we proceeded was suggested by the local people (i.e., who to contact, how and where to conduct meetings, and when to engage about particular topics or not).

Site and participant selection The three communities, located in Queensland Australia, represented a rural, regional, and metropolitan areas as defined by current classification systems (AIHW 2004). At the time of data collection, the residential population was 6800 (rural), 128,300 (regional), and 971,760 (metropolitan city; ABS 2006). The Aboriginal population constituted 7.4% (rural), 5.1% (regional), and 1.6% (city) of the populations within these sites (ABS 2001a, 2001b, 2001c). Both the rural and the regional areas had established Aboriginal health services that were well known and frequented by the local Murri community. In the city, Murri people accessed the local community health center which employed Aboriginal health workers.

Participants A major nonprofit health organization that operated in all three sites provided the names of one or two prominent Murri elders as a starting point for consultations. With these elders, a list of the most influential or active community members in the field of chronic disease prevention and management was generated. These participants would be most informative, knowing who else to recruit and able to facilitate local engagement. A focus group was held in each community with these participants, during which they were asked to nominate further community members to participate in an interview. A total of 39 people participated in this study (see Table 1 for participant demographics) across the three sites. Following our initial period in each community, a focus group was convened. Focus group invitations were given to the key elders and people who held pivotal positions in the health system or related roles. Over all three sites, 21 participants contributed to an initial focus group discussion as shown below: . Rural (n = 7): four community elders, a carer, a senior health worker, and a nurse . Regional (n = 8): a senior health worker, two elders, three health educator nurses, a social worker, and an Aboriginal police liaison officer . Metropolitan (n = 6): a community elder, a social worker, three senior health workers, and an Aboriginal hospital liaison officer A series of interviews were then conducted with other health workers, community members, and volunteers. The 18 interview participants consisted of 5 rural residents (2 Aboriginal nurses, 2 Aboriginal health workers, and 1 General Practitioner [GP]), 4 regional residents (all Aboriginal health workers/health promotion volunteers), and 9 city residents (i.e., 6 Murri people with chronic conditions including 2 elders, 2 Aboriginal

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Table 1. Participant demographics (n = 39) and method of data collection. Aboriginal Area


Rural (N = 12)

Regional (N = 12)

Metropolitan (N = 15)

Profession or community status

Female

Male

Community elders Aboriginal community nurses Senior nurse General practitioner Carer Senior Aboriginal health worker Aboriginal health workers Community elders Aboriginal health workers/ volunteers Aboriginal health education nurses Senior Aboriginal health worker Social worker – Aboriginal and Torres Strait Islander focus Aboriginal and Torres Strait Islander police liaison officer Community elder Community elders (chronic condition) Aboriginal consumers Social worker Aboriginal health workers/volunteer Senior Aboriginal health workers Community health worker Aboriginal hospital liaison officer

2 (FG) 2 (GI)

2 (FG)

Non-Aboriginal Female

Male

1 (FG) 1 (II) 1 (FG) 1 (FG) 2 (GI) 2 (FG) 4 (GI) 3 (FG) 1 (FG) 1 (FG) 1 (FG) 1 (FG) 2 (GI) 4 (II) 1 (FG) 3 (GI) 1 (FG)

1 (FG) 1 (FG)

1 (FG)

FG, focus group; II, individual interview; GI, group interview.

health workers, and 1 health promotion volunteer). It was agreed in the focus groups that we would provide a supportive, safe, and accepting environment for community members and Aboriginal health workers by permitting them to be interviewed in small groups if they wished. Joint interviewing (Arksey and Knight 1999) has been shown to minimize the risk of intimidation and, in Aboriginal communities, remove the risk of shame.2 This method is an acceptable way of collecting data in Aboriginal communities as it acknowledges and addresses the unequal power that exists between researchers and participants (Willis, Pearce, and Jenkin 2005). Only five participants elected individual interviews (a GP and metropolitan community members) and 13 requested small group interviews. Thus, five group interviews were conducted (2 rural, 1 regional, and 2 metropolitan), all involving only Murri participants. Non-Aboriginal people were also nominated by the elders to participate in the study if they were considered to be a reliable source of local knowledge. Five participants were non-Aboriginal, including a GP, two social workers, a nurse, and a community health worker. All had strong links with their communities, were well respected, and had specialized in Aboriginal service delivery in the area for long periods of time. One other non-Aborginal person (a community health workers) attended a group interviews as support for the Aboriginal participants. This person did not provide data and has not been included in this study.

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Data collection methods All data were collected in English, which was the primary language of all participants. Guidelines set by the Australian Institute of Aboriginal and Torres Strait Islander Studies for the conduct of ethical research within Australia’s Aboriginal and Torres Strait Islander communities were followed in this study and ethical clearance was granted by the institutional human research ethics committee. The focus groups were used to officially inform the community about the research and to develop a more structured understanding of the experience of chronic disease in the community. A brief overview of the research was provided together with an explanation of its potential benefit. The specific questions asked in the focus groups included: (1) the local meaning of key constructs such as health, self-management, and chronic disease; (2) the experience of living with chronic illness in this community; (3) the local relationships between Murris, the health system, and health professionals; and (4) factors that impacted on the management of health or disease in the region over time. Although these major prompts were used, the groups were unstructured, allowing discussions to be directed by the participants. With permission from these initial participants, interviews were then conducted with those that had been nominated in the community to gather more specific information about their experiences with the delivery or receipt of health services on the ground. The interviews were conducted using the same prompts as the focus groups, but with reference to individual rather than community circumstances. Broad issues identified in the focus groups were tested in the interviews to determine the extent to which they actually affected individuals. Group interviews proceeded as though they were individual interviews, with each person responding separately to each question. The only difference between group and individual interviews was that participants were able to discuss topics with each other if they wished. For the most part, individuals told their own stories but occasionally sought reinforcement from their co-interviewees to emphasize a point from history or check a local fact. Thus, it was reasonable to treat these interviews as though they had been conducted individually.

Data analysis Focus groups, group interviews, and individual interviews were recorded, transcribed verbatim, and analyzed using thematic analysis guided by constructivist grounded theory (Charmaz 2006). By drawing on this approach to data analysis, we were able to include multiple data sources and establish themes across the diverse data-set in an ‘evolving process.’ The constant comparative method of grounded theory includes every part of data (i.e., emerging codes, categories, observations, and hypotheses as well as different parts and types of the data). Data are constantly compared with all other parts of the data to explore variations, similarities, and differences (Hallberg 2006). Strauss and Corbin (1998) initially described the analysis process as a series of stages, which we followed as outlined below. We first independently examined the transcripts for each region, irrespective of whether they were gained through focus groups or interviews. Given that the purpose of the focus group was not to elicit interactions, but to respect the community processes, it was not necessary to treat this data differently to that gained through interviews. We


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worked at the level of the paragraph to identify key words or phrases in the data that could form categories (known as open coding). To check the validity of our process, we determined our level of agreement, which was high (99%, 96%, and 99% for each region, respectively). Where differences were identified, we discussed the codes to seek clarification and reach consensus. We then examined each code thoroughly to develop a structure of themes and subthemes (known as axial coding). In this stage, we looked for more inclusive themes that reflected similarities within each region and subthemes or processes that more fully defined the themes. In the final stage (selective coding), we examined the relationships and intersections between themes and across regions. We identified cross-regional commonalities (i.e., global themes) and differences (i.e., localized themes). The local themes (see Barnett and Kendall 2011) represented specific processes that may be expressed differently in each community whereas the global themes were fundamental and universal processes, reflecting broad concerns that were integral to how services typically became culturally unsafe. In this paper, we focus on these global themes. In line with the grounded theory method, we then examined the global themes further to develop a core category that integrated all the themes. This core category contributed to the development of our thesis about how the situation could be addressed. In the remainder of this paper, we present the five global themes using selected quotes that best illustrate the meaning. We then discuss the core category and provide conceptual guidance about how to progress in this area.

Results The five global themes or processes that were described by participants across all three regions included: (1) a historical reluctance to interact with the medical system, (2) the lack of cultural competence in the health system, (3) incompetent ‘colonial’ communication styles, (4) a clash between their collective approach to disease and the individualized health system, and (5) their holistic approach to health as being more than a medical state. We also identified a core category that was evident within all the themes and was central to the integration of those themes into a conceptual framework that could underpin the development of culturally appropriate health services. We labeled this core category systemic empathy.

Theme 1: historical reluctance to engage with the medical system Negative experiences of racism within the health system were fresh in the minds of participants even when these experiences were not their own (i.e., family, distant relatives, and even other community members). Stories of racism were transferred across generations and reinforced by current experiences, thus contributing to a negative ‘Murri understanding’ of medicine. Participants highlighted three distinct yet interrelated issues that were entrenched in history. First, they noted that medical services had always been, and continued to be, provided within a foreign context that was intimidating, unfriendly, and unfamiliar and generated discomfort. They described how medical activities (i.e., blood tests, diagnosis) were historically associated with colonization, categorization, and separation of families. Most participants shared historical anecdotes of relatives who

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had suffered as a result of medical intervention. This contributed to a lack of trust that explained their unwillingness to seek medical treatment:


When a blackfella3 does go to the health centre, he’s looking around nervous … while he’s in with the doctor he’s looking around and trying to get out of the place. About a quarter of what the doctor’s saying will sink in. (Murri, health worker, rural, group interview)

Second, there was a general lack of familiarity with medical services, resources, and processes, which limited the opportunity to access these services. Participants described this cycle of unfamiliarity as a generational phenomenon, beginning in history when Aboriginal access to health services was restricted. Each new generation modeled the behavior of their predecessors, highlighting the need for effective promotional activities. Third, there were distinct and historical gaps in terms of the language, knowledge, and meaning of disease that prevented shared understanding, particularly during medical consultations. The meaning of disease and the language used by participants were often based on longstanding stories, traditional knowledge, or community consensus developed over time. The language and definitions used by the medical system were often unrecognized or misinterpreted. When confused by terminology, Murris used traditional meanings and local experiences to guide their decisions. This difference was particularly problematic when diagnosing specific conditions, assessing needs, and prescribing appropriate treatments: many of the stories I’ve heard is from people that go into communities and say, ‘Oh, we don’t have anyone with a disability here,’ but after working with the community for a few months or even a year, there are a number of people with disability that emerge. (Murri, health worker, city, focus group)

Although most participants reported health conditions, concepts such as ‘chronic disease’ and ‘self-management’ held little meaning. Their deteriorating health often remained unnoticed due to continual minor adaptations that were regarded as a sign of Murri historical resilience.

Theme 2: cultural incompetence in the system Participants described health services as scientific and impersonal and were reluctant to access services until such time as their condition was in an advanced state of deterioration. They described significant examples of cultural incompetence particularly associated with the inept application of cultural principles based on superficial and stereotypical (mis)understandings of Aboriginal people. Although some health providers had a basic knowledge of culture, there was a general lack of appreciation and understanding to accompany that knowledge and translating knowledge into practice was often problematic. The cultural training for health staff (including administrative staff) and health professionals was believed to be inadequate. One participant provided an illustrative example: Out they all come [staff members who had attended cultural awareness training] and [think] oh well, now we’re all culturally trained … and then we go straight up to the [cafeteria] not long after … one [woman] said to the [cafeteria staff], ‘Oh you’ll have to clean this up … it just looks like a gin’s4 camp.’ (Murri, community elder, rural, focus group)

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Murri’s behavior during consultations was often assumed to represent disinterest or disengagement (i.e., minimizing symptom severity, omitted symptoms altogether, particularly those of a sensitive nature, minimal description of symptoms):


they [Murris] don’t want to go there [hospital] and complain. … They just want to say they’re sick, get a tablet and get out of there … we only go to the doctors when we’re really sick …We’ll have symptoms for years and just put up with it and learn to adapt. (Murri, carer, rural, focus group)

Theme 3: colonial communication styles Communication was often described as an abrupt series of questions or demands from a non-Aboriginal health professional followed by the rapid transfer of incomprehensible medical knowledge. Complicated explanations and excessive jargon created feelings of disengagement and discontent. Murri people described how they were likely to respond obligingly to questions (i.e., tell professionals what they believed they wanted to hear or simply agree). This style of communication left Murri clients feeling dominated, belittled, annoyed, and dissatisfied, reinforcing a sense of colonial domination and the need for Aboriginal resistance that further alienated them from health services: Some doctors talk to you, some talk at you. The minute they talk at you they’ve lost you, you don’t want to know them … Sometimes they talk down at you. The moment I tell them I’m of Aboriginal descent it goes down a notch and they speak to me like I’m not worth talking to or I’m too stupid to know. (Murri, community elder, city, group interview)

Effective and respectful communication allowed Murri clients to be more informed and empowered so they could make knowledgeable decisions. One participant described how an Aboriginal woman had refused essential treatment at a local hospital as a result of her confusion: Sometimes people [working] in hospital just don’t explain things clearly. I contact them [Murri patients] and explain these procedures and then they say it’s okay and they do it. It just needed more time to explain things to our people. (Murri, health worker, regional, group interview)

This health worker demonstrated an implicit knowledge of the client’s discomfort about communicating verbally with non-Aboriginal people, her literacy skills, especially in terms of completing forms, the need to communicate respectfully with elders, and the use of culturally correct terminology (i.e., Murri terms and language): Say somebody got them [a Murri community member] to pick it up [the telephone] and say ‘I need to see a doctor’ and at the end of the line you’ve got some arrogant white lady whose got no patience who says ‘Speak up I can’t understand you’ … and they put the phone down and they won’t ring up again. (Murri, health worker, regional, group interview)

Participants all relayed stories of how a previous negative communication with a health professional had discouraged them from responding to potential medical emergencies in future:

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They won’t pick up the phone and ring an ambulance, they’ll wait for us [Aboriginal Health Workers]. And they’ll say, ’Come out, someone’s having chest pain’. We’ll say, ‘Ring the ambulance’, ‘No’ ‘cause they’re frightened ‘cause they might be ringing the ambulance for nothing. [They are] fearful of criticism for their actions. (Murri, health worker, regional, group interview)


Most participants concluded that the relationship between the Murri community and the medical system was strained because the system continued to perpetrate colonialism, albeit inadvertently through ignorance and ineffective communication.

Theme 4: a clash with the collective approach to disease Participants’ experiences of chronic disease challenged the contemporary notion of selfmanagement instead believing that chronic disease management was a responsibility absorbed by many people. The term ‘collective’ was used to acknowledge the participation of family and the wider community in working to achieve a better standard of living for Murris. This cooperation was critical to the Murri way of life and was appreciated by some practitioners: when we left [the local Doctor] said, ‘I want all you kids to come in with me into the … room so you can learn how to do [treatment] … because you will need to do this for your father three times a day for postural drainage.’ (Murri, community elder, rural, focus group)

The theme of collectivity pervaded almost every topic of discussion. Participants alluded to cultural expectations of family assistance. When family members were unable to assist for some reason, the impact on the individual was significant. Reliance on the formal health sector was not a preferred state, being viewed as secondary to community support and, sometimes, deleterious to the local collective response: Community health carers … come in and sweep and mop floors and hang washing out. They [families and friends] don’t do that today, some of them [Murris with chronic diseases] have got big families, but none of the family members come and do that for them and that’s the saddest part. I see a lot of that anger, frustration, depression. (Murri, health worker, regional, focus group)

Theme 5: health being more than the medical state Addressing health in a holistic way was seen as being extremely pertinent to the Murri way of living. Participants repeatedly described the medical approach to health as being inappropriate in the Murri context. Participants referred to the interaction between intellectual, spiritual, emotional, physical, and cultural aspects of well-being and the need to address each aspect to achieve better overall health. The interaction between social and physical health and its importance for self-management was illustrated by one participant who described the recent death of a Murri woman from septicemia. There’s the one [Murri woman in a wheelchair] who used to go out onto the beach and they would catch a turtle and cook it up on the beach … this woman was there and safe and they would pick her up and carry her and plonk her down in the sand so she could be a part of it. So you have to think about modified seating and all of those things to be able to do that and of course they didn’t [use seating]. She was the one that died of septicaemia because they

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didn’t manage her pressure [sores]. And I suspect she understood [that she was at risk] … but she valued being a part of the community … she would take the risk because it was more important to be down on the beach. (Murri, health worker, city, group interview)

This example poignantly illustrated how disease management may be neglected, even when people are aware of the necessary actions, if it does not match community values.


Discussion In Australia, principles such as those identified in this study are embedded in the rhetoric that surrounds Aboriginal health services (Kendall et al. 2011) and, for some time, have been enshrined in policy documents such as the cultural respect framework (DoHA 2004). However, our study has confirmed that this rhetoric does not adequately translate into improved experiences for Aboriginal communities in Queensland. A prerequisite for engagement of Aboriginal people in the health system in the future is commitment to, and adequate resourcing of, culturally competent and respectful relations between local communities and their health services. Some time ago, Maher (1999) recognized that, in relation to health care, Aboriginal people have passively resisted the dominant beliefs and practices that form the basis of our health system. This enormous gap between Murri communities and their local services was apparent during our field visits and permeated all our thematic findings. Our study confirmed that the Aboriginal approach to health was holistic, steeped in history, religion, interconnectedness with the land, and obligatory requirements in relation to kin. These complex factors are currently given lip-service by planners, but are not adequately integrated into the design of health services in empathic ways. Systemic empathy of this kind is not a new concept. It has long been argued that continuing to address Aboriginal health issues within our monocultural health system is a form of racism and further colonization (Altman 2009) that, at worst, exacerbates the situation. As Reid (2012) so eloquently described, at the heart of these shortfalls in the health system lies ‘lack of respect, lack of compassion and failure to uphold the dignity of patients’ (216). She described the avoidable harm caused by these shortfalls as being symptoms of ‘systemic organizational failure on an incredible scale’ (Reid 2012, 216). Our data documented many of these avoidable harms and systemic shortfalls, suggesting the need for stronger articulations of antiracist policy and solutions based on deeper forms of understanding and compassion embedded within health services. The core category underpinning all our themes was the need for greater levels of systemic empathy that could enable services to meet the needs of vulnerable and marginalized populations. Empathy is defined as the natural capacity to share, appreciate, and respond to the affective states of others and has long been considered to have unique therapeutic value (Goldberg 2011). Goldberg (2011) described two types of empathy: one that underpins instaneous and short-lived interactions (e.g., helping someone in immediate need) and another that is implicated in sustained interactions (i.e., the lengthy immersion of one person in another’s psychosocial state). The former may guide short consultations within the health system, whereas the latter is based on a broader contextual and temporal understanding of health relationships – being understood over time and in one’s social environment. This latter type of empathy could not exist without appreciation of the principles identified in our study.


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The need for empathy in the clinical encounter is well acknowledged and reflected in the current call for person-centered care that is sweeping across the health sector (see McMillan et al. 2013). However, as Goldberg (2011) described, empathy places a set of complex demands on people, namely to avoid premature decision-making, to recognize and manage one’s own contribution to the situation, and to establish appropriate but therapeutically useful boundaries around interactions (temporal and physical). These demands can be anxiety-provoking and are easily relieved by distancing oneself from the other person, thus creating culturally inappropriate and unsatisfactory interactions as found in our study. In a similar vein, Cherry (1997) positioned the concept of empathy as a moralepistemic concern that may have little space within the logical, economically driven, and almost impersonal structure of health systems. Indeed, he noted that a certain degree of abstraction (i.e., interactions that are impersonal and lacking in empathy) is unavoidable given that health-care relationships are temporary encounters centered on a clinical need. He described the absence of empathic relationships as a necessary sacrifice made in exchange for the professional skills and institutional quality offered by a managed healthcare system. In contrast, the important theoretical work of Lo and Stacey (2008) commented on the irony that health care has been standardized to produce quality but at the expense of cultural considerations. Simultaneously, there is an overarching requirement for healthcare professionals to develop cultural competence, but this is defined in a standardized and formulaic manner. As Lo and Stacey observed, this formulaic approach is exactly what ‘renders medical practice culturally insensitive in the first place’ (753). Their critique focused on the ‘simplistic equation of culture with ethnicity as well as the uninformed dismissal of individual differences as random or idiosyncratic’ (743). Culture cannot, however, be reduced to a formulaic set of measurable and predetermined actions. Lo and Stacey (2008) agreed that it may actually be unrealistic and unfair to expect individual practitioners to manage the cultural complexity of patients’ lives. However, they concluded that therapeutic interactions need to be supported by entire systems that are responsive to the multitude of cultural schemas coexisting within any individual (client or practitioner) and the ways in which these cultures interact during the clinical encounter. Similar to our conclusions in this paper, they observed that to adequately address the need for cultural competence, we must develop more robust understandings of patient culture (i.e., high levels of empathy that permeate the entire fabric of the health system). According to Lo and Stacey (2008), cultural competence depends on our ability to shift from our narrow and static understanding of culture, as defined by one’s country of origin, to a broader collective level that acknowledges its inherent presence in the daily lives of all people, irrespective of one’s background. Culture should be viewed as a dynamic and complex reflection of each individual’s ‘sense-making’ schemas that influence, and are influenced by, interactions with the health system across time, space, and context. At the systemic level, the importance of empathy has been recognized by organizational researchers. Indeed, it has been found that organizations with a widespread ethos of empathy for the people they serve and their employees invariably outperform their competitors (Patnaik and Mortensen 2009). In the health system, this level of empathy has not been adequately conceptualized, leading Cordoba-Pachon (2011) to call for applied systems planners to engage more fully with human experience and develop


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better methods of capturing and understanding systemic empathy (i.e., by building empathy into systems). So how can empathic systems be produced and why should we bother? To date, the focus of change has been on education sessions for practitioners. Although there is an important place for this level of learning as a pedagogical basis for cultivating empathy (McAllister 2012), systemic empathy requires a more dramatic and difficult shift in organizational perspective, an ability to reject the frameworks that currently limit organizational thinking or action, and the capacity to reflect on organizational practices in transformative ways. In searching for ways of addressing the empathic deficits in the service system, Bloom and Farragher (2011) identified the need to restore a sense of ‘sanctuary’ for both employees and clients. Their sanctuary model involves the implementation of seven organizational principles that drive the way in which organizations respond to all stakeholders. These principles include a commitment to nonviolence (e.g., safety, trust, and resilience), emotional intelligence (e.g., respect for other’s emotions, emotional management skills), social learning (e.g., openness to learning and discussion), open communication (e.g., transparency, healthy boundaries), democracy (e.g., healthy leadership, participatory skills), social responsibility (e.g., reciprocity, justice, and value for the common good), and growth (e.g., planning for a better future). By using these principles to drive every action of the organization, it is argued that a systemic shift can gradually occur, reorienting the nature of the relationship between services, their employees, and their clients. Importantly, this type of shift has been achieved in several state hospitals and human services (see Bills and Bloom 1998), demonstrating feasibility as an approach. If the sanctuary model could be adopted, we may go a long way toward repairing trust, addressing the failings of the past, and restoring the humanitarian core of health services (Kendall, Muenchberger, and Clapton 2007). Although it is not a quick-fix solution, it may mean that we no longer have to sacrifice tangible and high-quality relationships for institutional efficiency as is currently the case (Cherry 1997). Naturally, the argument still remains that improving cultural competence at a systemic level may not translate into improved efficiency or effectiveness (Kirmayer 2012). However, there is evidence that by improving our response to culture, we may also address significant social determinants of health that are inherently connected to health outcomes (Brusin 2012) Culture is, therefore, inextricably linked to health outcomes and becomes an important focus for health interventions. Our predominant way of understanding and responding to culture is through concepts such as cultural competence, but this approach has been critiqued as a form of ‘othering’ that leads to stereotyping and further disempowerment (Kirmayer 2012). This research was limited by the small sample size and its containment to Queensland, Australia. In conducting our research as directed by the local community members, we were unable to retain the consistency of method (i.e., all individual interviews) and were reliant on local recommendations about who should participate. This approach may have produced some biases in the findings, but was an important step in gaining the trust of the elders. An important limitation of our findings is that they do not reveal anything new about the views of Aboriginal people. Sadly, our findings reiterated well-known problems in the delivery of health services in three Murri communities. Despite the limitations, our study has revealed an important pattern of underlying principles that account for such negative experiences. Importantly, it has shown that

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cultural competence training may be ineffective alone and suggests that without empathy embedded into all levels of health organizations, the ability to translate the rhetoric of cultural competence into practice will continue to be limited. By addressing the principles we have identified, the foundations of systemic empathy could be laid. These principles are likely to be equally relevant in other nations where Aboriginal cultures or minority groups have been overlooked in health service design. However, if we adopt a broader definition of culture, as directed by Lo and Stacey (2008), it is likely that systemic empathy would be relevant to all users of global health systems.

Key messages (1) Australian Aboriginal people do not access the mainstream health system despite the fact that their general health is significantly worse than that of non-Aboriginal Australians. (2) The engagement of Aboriginal people with the health system was influenced by five key features, including (1) negative historical experiences, (2) cultural incompetence, (3) inappropriate communication, (4) a collective approach to health, and (5) a need for holistic responses. (3) These factors are likely to provide the principles by which more appropriate solutions could be generated in future. (4) These principles remain poorly understood by non-Aboriginal health systems and even less well implemented. (5) Systemic empathy might provide an important focus for efforts to change health systems.

Notes 1. The term ‘Murri’ is a locally accepted term used to refer to Aboriginal Australians originating from Queensland. 2. Within the Australian Aboriginal population, the concept of ‘shame’ is commonly understood and encompasses feelings of discomfort, uncertainty, clumsiness, or feeling out of place. For example, an Aboriginal person may feel ‘shame’ when being singled out and praised for an achievement or when entering unfamiliar surrounds, e.g., a crowded function room (Stockwell and Scott 2000). 3. The colloquial term ‘blackfella’ is often used by Aboriginal and Torres Strait Islander people to refer to other members of the Aboriginal and Torres Strait Islander community. The term ‘blackfella’ usually denotes solidarity among fellow Aboriginal community members, but can be offensive if used by nonindigenous people. 4. ‘Gin’ is a derogatory Australian slang term for an Aboriginal woman which is no longer in use.

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